It’s been a while since I’ve shared much of my personal journey. This has been for a few reasons- the absolute largest one being my loss of time, I honestly swear, is a huge part of chronic pain. Time seems to work differently for me (and others I’ve met too). As we often have very long sleepless nights, some days full of naps, it’s like a whirlwind to try to keep up with day to day life. I have trouble just getting to my 2-3 very important medical/therapy appointments.

Another reason for my silences, I had/have kinda withdrawn into myself in trying to cope with another “hoop” my disability insurance has thrown my way. It has literally sucked all of my energy and has sent me on a tail spin mentally and emotionally- which causes the physical to escalate also.

Over all I think I am just so exhausted explaining myself, and trying to describe and remember every little detail so I can once again be judged and “rehabilitated” by people who mostly have never ever had or know what chronic pain is like to live with. You begin to question whether it matters how much you truly are suffering.

Which brings me to my situation today. I spend as much time and energy that I can on getting myself into the swimming pool, as it helps extend my body and spine naturally and I can have a safe workout with the support of the water. I was soo tired today after a rough night of extreme pain, so I had intended to allow myself time to just float too, as it helps. Upon leaving as I went to then bench to get my towel, a older man looks at me and says ” you have got to quit smoking”. I was dumbfounded and really could not initially figure out what on earth he was talking about. When I was in the shower and my hand ran over one of my pain patches I realized that he assumed that my two patches for pain- were for nicotine to stop smoking. I have to admit I am tired of people’s comments and questions- they are rarely kind or even considerate, what happened to respect and kindness?

Remember that everyone has their own battles and demons- be kind in crossing paths.

If pain had a face,
Then surely you’d see,
The demon that’s living,
Inside of me.
The knotted and tangled,
Monster within,
The fire and brimstone,
From this pain that I’m in.
My struggles and misery,
From my daily climb,
My impossible searching,
For relief I can’t find.
My hopes and my dreams,
They just fade away,
Because of the pain,
I suffer each day.
From pills to prayers,
In search of a cure,
But this body’s still broken,
Only pain is for sure.
But, though pain is constant,
And so very real,
No one sees my struggle,
Of how it makes me feel.
The internal torture,
The guilt and remorse,
Pushing and pulling,
And smiles I must force.
So please do not judge me,
Or deny I’m in pain,
Because I’m not pretending,
I’ve nothing to gain.
Respect and compassion,
Will go a long way,
To make this life easier,
Get me through one more day.

Dear Woman in Target-
I’ve heard it before, you know. That I “spoil that baby”. You were convinced that she’d never learn to be “independent”. I smiled at you, kissed her head, and continued my shopping.

If you only knew what I know.

If you only knew how she spent the first ten months of her life utterly alone inside a sterile metal crib, with nothing to comfort her other than sucking her fingers.

If you only knew what her face looked like the moment her orphanage caregiver handed her to me to cradle for the very first time–fleeting moments of serenity commingled with sheer terror. No one had ever held her that way before, and she had no idea what she was supposed to do.

If you only knew that she would lay in her crib after waking and never cry–because up until now, no one would respond.

If you only knew that anxiety was a standard part of her day, along with banging her head on her crib rails and rocking herself for sensory input and comfort.

If you only knew that that baby in the carrier is heartbreakingly “independent” –and how we will spend minutes, hours, days, weeks, months, and years trying to override the part of her brain that screams “trauma” and “not safe”.

If you only knew what I know.

If you only knew that that baby now whimpers when she’s put down instead of when she is picked up.

If you only knew that that baby “sings” at the top of her lungs in the mornings and after her nap, because she knows that her chatter will bring someone to lift her out of her crib and change her diaper.

If you only knew that that baby rocks to sleep in her Mama’s or her Papa’s arms instead of rocking herself.

If you only knew that that baby made everyone cry the day she reached out for comfort, totally unprompted.

If you only knew what I know.

“Spoiling that baby” is the most important job I will ever have, and it is a privilege. I will carry her for a little while longer–or as long as she’ll let me–because she is learning that she is safe. That she belongs. That she is loved.